Charlie Gard, now aged 10 months, is believed to suffer from a rare genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness. His parents want to transport him to the U.S. for experimental treatment while the hospital says life support should be withdrawn. CNA photo courtesy of Connie Yates

LONDON, England – Legal efforts to bar the parents of a British baby born with a disabling medical condition from seeking treatment overseas are based on deep ethical errors, a Catholic expert in medical ethics has warned.

“It seems to me completely wrongheaded that the state should be stepping in here when the decision that the parents are making is really aimed at the best interests of the child,” Dr. Melissa Moschella, a Catholic University of America philosophy professor, told CNA.

“It’s not crazy, it’s not abusive, it’s not neglectful. It’s the decision of parents who want to, however they can, to give their very sick child a chance for life.”

She said such a decision “should be completely within the prerogative of the parent,” citing the United Nations’ Universal Declaration of Human Rights. According to Moschella, that declaration “clearly indicates that the parents, not the state will have primarily responsibility.”

Charlie Gard, now aged 10 months, is believed to suffer from a rare genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness. The disorder is believed to affect fewer than 20 children worldwide. Charlie has been in intensive care since October 2016. He has suffered significant brain damage due to the disease and is currently fed through a tube. He breathes with an artificial ventilator and is unable to move.

His parents, Connie Yates and Chris Gard, have wanted to keep him on life support and transport him to the United States in order to try an experimental treatment.

However, their decision was challenged in court by hospitals and an attorney appointed to represent Charlie. The parents appealed a High Court decision, and their appeal to the U.K.’s Supreme Court was rejected.

Their final legal challenge is presently before the European Court of Human Rights. The court has said Charlie must continue to receive treatment until its judges make a decision.

Moschella said the legal decisions favouring ending life support for Charlie are effectively “telling the parents that their child’s life has no value and that therefore they should cease any effort to heal him of his disease.”

These decisions represent a “quality of life” ethic and an ideology that say human life is valuable only if it meets certain capacities.

A post shared by #charliesfight (@charliesfight) on Jun 19, 2017 at 7:28am PDT

“It’s the same ideology that underlies allowing euthanasia or physician assisted suicide,” she said. “That’s completely opposed to the Catholic view in which every human life has intrinsic value regardless of the quality of that life.”

Charlie’s parents have raised more than $1.6 million to help seek experimental treatment for him in the U.S. Their decision faced legal challenge from Great Ormond Street Hospital, where he is being treated.

In early April, the baby’s hospital challenged their efforts. The hospital’s experts argued in court that long-term life support should be withdrawn from the baby because his quality of life was so poor.

Charlie’s court-appointed lawyer argued before a High Court judge that any treatments in the U.S. would be experimental and long-term life-support would only “prolong the process of dying.”

Charlie’s parents had their own legal representative in the case, who argued that travel to the U.S. for treatment would not cause the boy significant suffering or harm and could give him another chance.

Yates, Charlie’s mother, has argued that she would welcome any treatment that could help him live. She also suggested anything learned during an experimental treatment could help treat future babies who suffer from the disorder.

According to Moschella, who has a background in parental rights and medical ethics, said parental rights derive both from the “special intimate relationship” they have with their child and from their primary obligations to care for their own children. Interfering with their conscientious best efforts is akin to violating religious freedom, she said.

“It is a deep violation of conscience, when, without a very serious reason, the state presents parents from fulfilling that conscientious obligation,” she said.

She noted that what Charlie’s parents are trying to do by helping secure extraordinary treatment is not ethically required by Catholic ethics.

“It would be perfectly morally acceptable should they choose to forgo seeking further treatment and take the baby off life support and allow him to pass away naturally due to the underlying disease,” the professor said. “But it’s also acceptable, on Catholic ethics, to do whatever you can to heal a person if you think that there’s any chance that a treatment could have a positive effect.”

She suggested that extraordinary treatment could be unethical only when “there is absolutely no hope of any benefit whatsoever” and the treatment is painful to the patient, or the treatment would take away “important resources that are needed to help other patients who could benefit.”

Moschella said there should only be legal intervention against the wishes of parents in cases “when there is a clear case of abuse or neglect or some significant threat to the public order.”

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